Translating patient education theory into practice: Developing material to address the cardiovascular education needs of people with rheumatoid arthritis

Abstract

Objective

This paper describes the rationale and design of a theory-informed patient education programme addressing cardiovascular disease for people with rheumatoid arthritis (RA) to illustrate how theory can explicitly be translated into practice.

Methods

A steering group of rheumatologists and psychologists was convened to design the programme. The Common Sense Model, the Theory of Planned Behaviour and the Stages of Change Model were used to underpin the topics and activities in the programme. User involvement was sought. The programme was formatted into a manual and the reading age of the materials was calculated.

Results

A small group 8-week programme was designed. The structure of the patient education programme, including topics, underlying psychological theory as well as behaviour change techniques, is described.

Conclusion

This patient education programme addresses a currently unmet educational need for patients with RA and uses theory to design, not just evaluate, the programme. This will allow both enhanced interpretation of the results when the programme is implemented and replication by other units if successful.

Practice implications

The actual design and detail of education programmes merit wider dissemination to facilitate progress in the process of development and application.

1. Introduction

Patient education has been defined as “any set of planned educational activities designed to improve patients’ health behaviours and/or health status” [1]. In rheumatoid arthritis (RA), education interventions addressing articular symptoms are well established [2,3]. However, it is the co-morbidities of RA that mostly account for increased mortality, poor quality of life and work disability [4]. In particular, co-morbid cardiovascular disease (CVD) is evident early on [5] and accounts for ∼50% of the mortality in RA [6]. Therefore, there is a need to educate RA patients about CVD prevention, particularly aiming to change modifiable CVD risk factors, such as smoking, sedentarity [7], obesity [8] and a high-fat diet [9]. No standard, widely available resources currently exist that are designed specifically for RA patients: new educational material is required to meet this currently unmet need [10].

Patient education may involve information only, counselling or behavioural therapies. Although many believe [11] and have shown [12] that improved knowledge is fundamental to behaviour change, such improvements alone do not necessarily translate into behaviour change [13]. Behavioural-style education programmes have shown the best outcomes [3,14] in both secondary [15] and primary [16] CVD prevention by effecting improvements in lifestyle factors, cardiac risk factors and incidence of CVD events. However, results are variable; interventions grounded in the theories of human behaviour seem more effective [17,18]. Health psychology models of human behaviour provide a theoretical framework on which behavioural interventions can be constructed or evaluated [19]. The Common Sense Model of Illness Perceptions has been used to understand how patients may (or may not) develop coping strategies, such as making appropriate behavioural changes, when faced with new symptoms or illness [20]; the model postulates this depends on an individuals representation of that illness, influenced by both their lay beliefs (based on the identity, perceived cause, timeline, consequences and control/curability) as well as emotional response to that illness [20]. Social Cognition Theory postulates that behaviour critically depends on a person's representations of their social world, as well as the expectations and consequences relating to behaviour; the concept of self-efficacy lies at the centre of this theory and describes one's belief in one's ability to succeed in certain situations [21]. Several social cognition models have been developed, e.g., the Theory of Planned Behaviour considers that a person's attitude to a behaviour (based on beliefs of risk and evaluation of outcome), the socially determined norms and their perceived behavioural control predict behavioural intentions [22]. The Stages of Change Model (or Transtheoretical Model) describes the 5 stages (pre-contemplation, contemplation, preparation, action and maintenance) a person may pass, and cycle through, in order to achieve behaviour change [23]; identifying what stage a person is at can allow an intervention to be tailored appropriately [24].

Collectively, a set of factors can be identified from the literature as being associated with successful patient education interventions (Table 1).

Table 1.

Recommendations for designing a patient education initiative.

• Conduct a problem analysis prior to developing an education programme [25].

• Research both the patient's health needs and beliefs [26] and the health professional's agenda [27].

• Use a theoretical model [25].

• Design an intervention to deliver clinical benefits, as well as educational benefits [26].

• Ensure the aims, content and endpoints of a patient education initiative are congruent [27].

• Organise group education and involve partners [28].

• Learn what are existing patient health beliefs and modify if necessary [28].

• Include opportunities whereby patients can learn and develop the skills necessary to overcome adverse habits, in order to encourage behaviour change [11]; these may be self-management techniques, problem-solving or self-efficacy techniques [26,29].

• Encourage goal setting and redefine unrealistic goals [28].

• Provide feedback [28].

• Evaluate the programme [25].

The Medical Research Council Framework for developing and evaluating complex (non-pharmacological) interventions, advocates this theory-based approach [30]; it recommends reviewing the evidence, then a modelling phase to identify components of the intervention (suggesting qualitative research to define relevant components), and later a randomized controlled trial of the intervention [30]. There are some descriptions of these recommended phases [31–33], but these are in the minority. Systematic reviews of behaviour change interventions suggest that theoretical models are used more to evaluate, rather than develop, interventions [18,34] and greater attention to theoretical development is required [34]. In addition, explicit description of behavioural interventions would allow replication of effective programmes by others [18].

Mindful of these recommendations, background research was performed to: define the nature and magnitude of co-morbid CVD in RA [5]; highlight current recommendations for CVD risk management as an integral component of the long term care of RA [10]; reveal that no widely available RA-specific CVD patient education resources are currently available [10]; identify the suppositions, agenda, health needs and beliefs of healthcare professionals and RA patients [35,36]. This supported developing a small group educational intervention and suggested three models were particularly pertinent: the Common Sense Model, the Theory of Planned Behaviour, and the Stages of Change Model. Interventions addressing cardiovascular risk factors using these models have effected significant change [24,37,38].

This paper aims to illustrate how this background theory can be translated into practice by describing the rationale and design of a theory-informed patient education programme.

2. Methods

A steering group was convened to design the education programme consisting of 2 rheumatologists with special interests in patient education (HJ) and CVD in RA (GDK), 1 rheumatology chartered health psychologist (EDH), and 2 academic psychologists specialising in cardiovascular psychophysiology (DC) and coping with the threat of ill health (PB). There was consensus that the above three models were appropriate and would help participants identify the most suitable CVD risk factor for them to modify first. Techniques relating to these models were inserted into an outline for the educational programme. Other topics were identified, including accurate estimation of 10-year CVD risk, promoting personal responsibility for one's health [39], challenging perceptions of the type of person likely to get heart trouble (coronary candidacy [40]) and screening for depression [36]. Different cognitive behavioural therapy techniques were discussed; graded goal setting was agreed to be particularly important in supporting and achieving behaviour change [24,28,41]. EDHs’ clinical experience offered valuable insight into which techniques have proved helpful in RA. The structure of weekly meetings was chosen as this format has proved successful for the Arthritis Self-Management Programme [42], a multifaceted education programme based on the principles of self-efficacy, pioneered by Lorig in the 1970s in the USA and now successfully delivered in Australia and Europe [43]. After several cycles of discussion/evolution of the programme, led by HJ, the educational content and activities were formatted into a patient manual, with a chapter per weekly meeting; identical interactive written and web versions were produced. User involvement was provided through the membership of the National Rheumatoid Arthritis Society; most feedback was specific suggestions to simplify the language in the manual and appropriate amendments were made. One respondent said he did not like group work, contrary to previous research [36,44] but this is perhaps inevitable; most respondents commented favourably on the benefits of group work. The reading age of the manual was calculated using the Flesch-Kincaid readability test [45]. This score, which measures comprehension difficulty, is calculated using a readability calculator available at: http://www.editcentral.com/gwt/com.editcentral.EC/EC.html. The Flesch reading ease score was 73.4% overall (i.e. it is easily readable by someone with a reading age of a 13-year old).

The steering committee agreed that external input on the course would be very helpful. A person with RA was recruited (modelling by other patients may be very powerful and is the principle behind the use of lay leaders on the Arthritis Self-Management Programme [42]), as well as a dietician, exercise physiologist and smoking cessation advisor to provide tailored expert advice and resources as appropriate. All steering group members agreed on the final version of the programme.

3. Results

The educational intervention has been developed as a small group (eight participants) 8-week programme, involving weekly 2.5 h meetings in weeks 1–4 and week 8 with the opportunity to practice behaviour changes in weeks 5–7. The course is led by a health professional and works through the corresponding 8 chapters of the manual; the interactive nature gives lots of opportunities for group discussion and peer support. Table 2 summarises the content and activities of the course in chronological order, and relates this to the underpinning psychological theory. The full manual, subject to copyright law, is available by contacting the first author.

Table 2.

CVD patient education programme for people with RA.

Week	Topic	Theoretical model/concept	Activity and behavioural techniques employed
1	Introduction
	Current beliefs about CVD	Common Sense Model	Group discussion
	CVD and RA; CVD risk factors	Common Sense Model	Information giving, group discussion
	Reaction to learning about CVD	Common Sense Model	Encouraging coping rather than avoidance techniques
	Lifestyle modifications	Common Sense Model	Concept of personal responsibility for health
			Self-management
			Patient example
2	Risk factors for CVD	Common Sense Model	Calculating personal risk for CVD, including a BMI calculation
	Consideration of which CVD lifestyle risk factor is most appropriate for them to modify	Theory of Planned Behaviour	Importance, intention, perceived behavioural control over CVD lifestyle factors [46]
		Stages of Change	Readiness to change lifestyle risk factors for CVD
			Motivational interviewing [39]
3	Identification of CVD risk factor to be modified	Stages of Change	Target goal identified in writing for each participant
	Graded goal setting	Stages of Change	Identification of first goal, using modelling by other participants, examples from relevant health professionals, setting SMARTS goals [47] and identification of relevant organisations
4	Review	Stages of Change	Comparison of performance against initial goal set
	Graded goal setting	Stages of Change	Further SMARTS goals [47] including rewards and contingency plan to cope with setbacks
5–7	Graded goal setting and weekly review	Stages of Change	Skills mastery [42]
			Regular practice
			Practicing positive health behaviours
			Self-monitoring
			Self-management [19]
8	Review of progress	Theory of Planned Behaviour	Comparing intention and perceived behavioural control for lifestyle modifications against week 2 scores [46]
	The future	Stages of Change	Identification of which cognitive behavioural techniques they have found most helpful personally

BMI = body mass index.

The Common Sense Model of Illness Perceptions particularly underpins the first weeks’ meeting. Some patients with RA have previously described incorrect aetiological models of disease [36], which Leventhal posits will (incorrectly) inform their representations of CVD. Therefore, currently-held lay beliefs are explored and challenged in small group discussions; accurate knowledge about the symptoms of CVD, its cause, chronic nature and consequences is imparted, which provides the rationale, and explains the importance of making lifestyle changes, or adopting ‘active coping’ techniques. A patient, who has recently made remarkable improvements in these health behaviours, then describes their personal story. This programme will support participants similarly develop and maintain their coping efforts so their experiences feedback constructively into their controllability representations of CVD.

The Theory of Planned Behaviour and the Stages of Change models are translated into practice in week 2. Participants are asked to rate the importance, their intention, confidence, perceived ease/difficulty and readiness to: stop smoking, increase exercise, eat heart-healthy low-fat diet and achieve a normal weight. This makes manifest patients’ readiness to change behaviour, permitting them to identify which CVD risk factor would be the most suitable to modify first. Activities such as identifying the advantages and disadvantages of making, or not making, this change as well as considering what friends or family would want them to do, spring from both these theories and may be powerful triggers for behaviour change.

The Stages of Change Model is further translated into practice in weeks 3–7. In week 3, participants commit to the behaviour they wish to modify and identify their target goal. Graded goal setting is introduced [41], subdividing stages of the model, e.g., setting several stages of preparation and action goals gradually increasing in intensity or duration. Experience from other participants and advice from a visiting dietician, exercise physiologist and smoking cessation advisor may help identify useful resources. Participants commit to their first graded goal and ensure it is ‘SMARTS’; Specific, Measurable, Action-orientated, Realistic, Time-orientated with contingency plans in case of Sabotage [47]. In week 4 the participants review their performance against their first graded goal set. The group provide praise, constructive feedback and contingency planning as appropriate. Each participant now commits to a series of graded (SMARTS) goals for the forthcoming weeks when the group does not meet. In this way, weeks 5–7 give participants the opportunity to practice their new behaviour, self-monitor, master skills necessary for long term behaviour change and gain confidence in their ability to implement lifestyle changes.

The Theory of Planned Behaviour underpins the activities in week 8. Each participant reviews their progress over the course and re-evaluates their intention, confidence and perceived ease/difficulty in making lifestyle changes. Testing out the experience of making behaviour change, seeing the response of family/friends, gaining confidence in their mastery of a behaviour and reflecting back on their progress should, according to the Theory of Planned Behaviour affect their attitude towards behaviour change and predict improved behavioural intentions for the future.

4. Discussion and conclusion

4.1. Discussion

This article describes the translation of health behaviour theory into practice, through a process underpinned by relevant stakeholder involvement, background research and theoretical models (as recommended by the Medical Research Council framework [30]), in order to develop novel educational material. This process and product meets all the recommendations described in Table 1; evaluating the programme is described below.

The specific use of the Common Sense, Theory of Planned Behaviour and Stages of Change Models in this programme allows each participant to personally determine which CVD risk factor they should aim to modify first, based on which risk factor they believe they are most likely to succeed at modifying; advice from health professionals to modify a risk factor that the patient has no intention or readiness to change undermines self-efficacy skills and may be futile [48]. Whilst intention does not always translate into action, the flexible nature of this programme and the different cognitive behavioural techniques it uses should optimise the process that individuals go through in their decision making. In this way, the content of the programme is congruent with the aims and endpoints of the programme.

The reading age of the manual accompanying the programme is appropriate. Many RA patients have limited health literacy [49]; however, 89% of an English sample of RA patients had a reading age of 13 years or above [50], suggesting that our intervention manual, despite focusing on complex health issues, should be accessible to the majority of patients.

Other studies of complex patient behavioural modification interventions often simply report the results of their programme, furnishing only limited details of its precise nature. This makes interpretation or replication harder. This intervention is currently being compared, in a randomized controlled trial, to a control group receiving a small factual leaflet about CVD and is due to report in late 2011. Outcome measures address educational (knowledge), behavioural and clinical endpoints. This detailed description of the programme will allow replication by other researchers if the trial shows the intervention to be effective. Should, however, the trial fail to show improvements then a detailed analysis will be possible, knowing the components of the intervention. This information can inform future patient education initiatives and minimise the cost (both time and money) and ethical implications in repeating research studies.

4.2. Conclusion

This paper describes the development of a theoretical and research based patient education programme. The requirement for patient education programmes is increasing due to recognition of their impact in managing chronic disease [51] and the increasing complexities and co-morbidities of chronic disease [4]. Understanding the effective components of patient education will allow theory to successfully be translated into practice for the ultimate benefit of patients.

4.3. Practice implications

We would advocate further groups describe the education programmes they develop as individual research papers.

Disclosure statement

“I confirm all patient/personal identifiers have been removed or disguised so that patient/person(s) described are not identifiable and cannot be identified through the details of the story.”

Conflict of interest statement

No conflict of interest has been declared by the authors.